Nothing About Us, With Us

July 23, 2014

So. A week on from the news breaking that NHS England have given the WV gig to Sir Stephen Bubb, where are we?

Probably two steps further back than we were a week ago. In the past week most of the members of the Bubb & Squeak breakfast club have issued statements that they will be putting the views, needs etc etc of learning disabled people and their families at the heart of the planning. This is an immediate red flag for me – people who put disabled people & their carers at the heart of things don’t announce it. They just do it. They do ridiculously old fashioned things like ask questions, listen, understand. (I bet the “modern way” crowd are pissing themselves laughing over that idea). As time passes, it feels like everything about the WV review is shamefully empty and self serving.

On Monday the Bubb group are meeting up again. No details on what is happening. Another brekkie? Paint balling? Who knows. For me, this group is now so tainted, it can only do more harm than good. To be so out of sync with the people you’ve been appointed to serve goes beyond offensive.

In the meantime, NHS England issued another statement today, with a promise of a new announcement next month about a new action plan for dealing with the ATU issue. This is probably Bubb’s The Plan. The words carry an air that things are whizzing along. The reality has a more snail like quality to it.

The #justiceforlb group campaign was about all the things the Bubbfest is not. Profound engagement. Blistering creativity. Passion. A heart. Ears. Drive. Brains. Stoicism. Incredible humour. All the attributes needed for fantastic change.

I get livid when I see something posted about Bubb, the charities, NHS England and all those vacuous words. But it doesn’t last long because I know that the #justiceforlb energy is too strong to allow the Bubbs to steer the ship.

No more statements please like “we need to work out how best to engage with people and their families”. Stop it. Its bollocks. There is no intent behind that statement.

You might start though with the thought that perhaps it would work better with a power shift – we know what we want – if we think you’ve got anything to offer, we’ll engage with you.

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What more can be said – absolutely! Worryingly it feels as if they can’t reverse but we know how these kinds of groups work. We need everyone not prepared to accept anything less than closure & proper local connected services to join together & keep going. All MPs need loads of letters telling them – so #JusticeforLB; People First England – support their voice at the Party conferences; CHANGE supported by Lumos with their OurVoicesOurChoicesOur Freedom demands for closure; supported by the CampaignforaFairSociety’s call for action #3000lives & H&SA’s There is an alternative… all need to speak loudly & persistently. There is a plan – it’s not a 10 year one/a buildings-based one, but one which puts families & individuals in charge of what happens to individuals & ensures the government stands with them insisting on an end to funding A&T units ie they’ll only fund community supports & reasonable adjustments to local mental health services. And the assumption that everyone can be served in their community should start this and I like the idea that NHS &LAs would have to show why they did anything differently – assume they could have funding withdrawn maybe? So keep the pressure up and keep sharing these blogs

Mark
And had any of us and or ours been invited to tick the Bubb politically correct box, for breakfast with our self perceived betters, we and ours would have only been token bums on politically correct seats. It was even more disgusting and truly illuminating, that no one even remembered to tell some poor inclusion ‘Erk to remind Bubb’s et al to invite someone/anyone….and so tick the ‘done that’ and’ keep ‘em happy’ box…..

Years ago I worked for a major LD charity. i was invited to observe modern practice in a LA, and attend a meeting. LA was really a really ‘modern’ and of the moment. It had two learning disabled ladies ( sacrificial lambs sent by Day Centre?) ticking the inclusion box at meeting. The discussion between LA people, was on sexuality and LD. . Someone belatedly noticed ladies.. When asked (big afterthought) what they thought,. one lady. said ‘what you speak about is very, very rude’, and she burst into tears. Bums on seats. Bums on seats………

What is needed is a massive vote of no confidence in this overpaid group of self servers. Let NHS England recruit some real people for the job. People committed to change these terrible injustices inflicted on families and their loved ones. People who have got an idea what it is like to care for a loved one with a learning disability and to recognise that most of the time it can be a damn awful cross to bear.

I quote from the Times Newspaper article written by Alice Thompson. She writes
‘It is easy to say ‘Let their parents care for them’. But imagine what it is like looking after a severely mentally and physically disabled child every day and night for decades, and to continue caring for them into their middle age, Parents who have been worrying this week whether their child will win the egg and spoon race or pass their GCSE’s can have no idea of the exhaustion or desperation’

Nor can they understand the cost, the endless paperwork and tribunals involved in fighting for a severely disabled child to have any kind of future.’ The article was called ‘This isn’t caring for the fragile. It’s neglect’ I will admit I cried with anger and a bit of self pity too when I read the article which was e-mailed to me by another parent of a disabled child.

Is anybody else fed up with all these ‘hit and run’ professionals that make our lives unbearable and then piss off after the damage is done to go and do it again to someone else in some other borough. I am.

Pauline – I have been looking for over a decade for the phrase “hit and run professionals”, they are, bizarrely, very often the ones who insist on how “lucky” we are to be able to ” fight through the system”.